61 and facing who knows what....double mastectomy

Anonymous

I was diagnosed with DCIS on July 27, 2012. Luckily it has not gone into the lymph nodes. I have had 3 lumpectomies. Last Thursday I spoke with my doc about mastectomy and reconstruction.

I live in a rural area in Eastern Washington and my younger daughter has set me up for a 2nd opinion in Seattle.

I am not sure if older women have more sense, but certainly our issues are different. My heart breaks when I read about young women who are diagnosed with breast cancer. My son-in-law lost his first wife to breast cancer.

I am stunned right now. I had weekly surgeries the last 4 weeks. I can do nothing but sit and stare at the computer or tv screen. My husband is great and is doing all the cooking. Sheesh I am at a loss. I love to exercise bought a FitBit ( which I love ) months ago, but have not used it since diagnosis. I also need to lose about 30 lbs. And, reading how weight loss is helpful in recovering from breast cancer

SO, I am hoping to receive and give encouragement.

Not sure how to post my diagnostic stuff on here. 

kira1234

Beth, Sorry you had to join this group, but you will find a very supportive group of ladies here. I totally understand how you are feeling just staring at the computer. I'm 2 years out now, but remember those first few months so well. I'm a bit younger than you I was diagnosed at 57 and am 59 now.

As far as putting info up go to my profile at the top of the page. Click on it andadd anything you want into your profile.

Anonymous

Thanks, Kira.

kira1234

Beth, I must be missing something. You say it was DCIS, but it's stage 1. I thought DCIS was stage 0. Mine was stage 1 but it had both LCIS and ILC. The ILC even if only a small amount found is what gives the stage 1 cancer diagnosis.

Anonymous

Oh, heck, Kira...I don't know for sure all of this has happened so darned fast. I think a nurse from the oncolgy center said it was stage one perhaps because of the size of the tumor ( 1.5 cm) and last lumpectomy they found another focus.

I am going to get a second opinion from a cancer center in Seattle hopefully this week.

Thanks...

I also had a sentinel lymph node dissection ( right ) negative 

Cindi74

Why a masectomy after your  lumpectomy?  My surgeon pointed out that life expectancy is the same for L as for M.  Reoccurance is greater for lump.  I had 7 lymph nodes- dissection, two involved and it was beyond one.

Were there not clean edges?

Am very happy with results.  Now chemo, Tax, and radiation.

 Ask questions.  I suspect male doctors are much more likely to go for the big M.  My female doctor understands.

proudtospin

Beth, deep breath time, good that you are getting a second opinion, suggest getting your questions for the doc ready and written down.

I have DCIS and also had 3 lumpies, then rads and now on a med called aromasin.

I did not nor was itever recommended to me to have a mastectomy.  Oh yeah, I was about 58 at the time of diagnosis and remember the "summer from Helllllllll"

If you like to excercise, then tryto continue some things as it will help keep your mind occupied and also, be good for you.

Gee I just came back from the local YMCA as I was looking into the LiveStrong excercise program which in my Y, is free to cancer survivors.  You may want to check it out and see if availabele to you locally.

best of luck and stay positive, stay active

Blessings2011

Hi, Beth....sorry about your diagnosis, but glad you found this forum. Once you learn to navigate your way around, you will find lots of great information from women who have walked the path before you.

My mom had BC. She was dx'd at the age of 61. (She passed several years ago at the age of 87, of other causes. Her cancer had never returned.)

Just before I turned 61 last year, I was dx'd. At first they suspected a benign papilloma, then several biopsies showed DCIS, and the final two procedures (of 7 total) showed a small amount of IDC (invasive ductal cancer) in the left breast. All my annual mammograms for the past 20 years had been deemed "cancer-free". But I had spontaneous bleeding from the left nipple, leading to the more agressive tests, which my PCP had refused for years, saying that an ultrasound or an MRI were not screening tools.

I had multifocal cancer - in two different places. My BS told me she could do a lumpectomy with radiation, but that she would have to take a large wedge of tissue, and I may not be satisfied with the results. She suggested a unilateral mastectomy - UMX.

I thought long and hard about that. I thought about my history (Mom's BC, my hormone use, my size - 38DDD) and my future (heavy, dense, breasts, and a feeling from my Radiologist that something was lurking in the right breast.)

I decided to have a bilateral mastectomy (BMX) with immediate reconstruction, using tissue expanders (TE's) until I could get saline implants. My BMX was last December, and my exchange surgery - to permanent implants - was last Wednesday.

In two weeks, it will be one year since my diagnosis of breast cancer. Because the IDC was small, caught early, non-agressive, and the surgeon got clear margins all around, I did not need chemo or radiation.

While the reconstruction process was long, annoying, and at times painful, I have absolutely no regrets.

I would make the same decision in a heartbeat. But having said that, it was the right decision for ME. I did tons of research, read a gazillion posts here on BCO, and prayed a lot. When the day of my surgery came, I had complete peace that I was doing the right thing.

I think the reason you are at such a loss right now is that 1) you're still recovering from your surgeries, and 2) you may not have enough information to make an informed decision about where you want to go with this.

I think it's great that you'll be seeing a specialist in Seattle.

Wishing you the best!

p.s. You mentioned weight loss - I see that you are ER+. My oncologist wants me to take 5 years of an estrogen-blocking drug called an aromatase inhibitor. I argued that I was post menopausal, plus I'd already had a hysterectomy, so there was no more estrogen in my body. She kindly pointed out that estrogen is produced in body fat, of which I had plently.

So I joined a weight loss program and started exercising faithfully. I've lost 50 pounds and 63 total inches so far. My MO says by doing that alone, I have reduced my risk of recurrence by 23%. Not bad for not having taken a single drug yet!

Anonymous

Blessings, you are indeed a blessing.

You sound lots like me. All of my mammos have been fine and I never miss one. So, this dx took me completely by surprise.

Ironically I am building a studio at my house to teach Nia and Ageless Grace both wonderful movement exercises. This diagnosis finds me ON MY COUCH for 3 weeks. Tomorrow I am getting up.

My surgeon said that because of the multi focal thing of my cancer AND because he could not get CLEAR MARGINS mastectomy was the way to go. I, too, have large breasts 36DDD so I would like to order smaller breasts.

My big issue is finding a good oncologist. I am not happy with the oncologists in the area, so I am going to consider Seattle or Spokane. I trust my surgeon very much, so that's a big relief.

I am sitting here today feeling guilty about all the not so healthy food and wine I have consumed over the years which is why I need to lose 25 lbs. I know beating myself up over the past doesn't help at all, but today is a good Beat Beth Up day.

My estrogen was "weakly" associated and I had no progesterone effect.

I go Tuesday for genetic counseling but I am not sure if they have run any of the genetic tests yet. I have two adult daughters and I want to make sure that there is not a genetic component. We have no family history of breast cancer, but I want to double check that.

My biggest challenge right now has to do with food. Basically I eat fairly well, but I am in no way a pure/clean eater. I love Mexican food, pizza, and all things related to sugar including white wine. I got a great cookbook last week, Back in the Swing, and I am enjoying it very much.

I think I just need to go slowly right now. Have cut out Diet Coke ( ough ), white wine ( mini ouch ) and am increasing fruits and vegetables.

So much to digest, but the responses really make me feel less hopeless.

THANK YOU ALL FOR YOUR RESPONSES ( yelling with happiness) 

kira1234

Beth size has nothing to do with it being stage 1, it's if it's invasive, which DCIS never is.  The size of mine was .6mm but there was invasive cancer in part of it hence the stage 1 for me. I have to agree with others my BS never suggested I have a mastectomy, quite the opposite felt it would not be needed. With that being said the decision has to be yours, many women on this site have decided a mastectomy was right for them, but that was there decision after knowing all the facts.

kira1234

Blessings congrats on the weight loss. Did you do that while on the meds? I'm on Aromasin, and have found it hard to lose the weight I also need to lose.

Beth don't beat yourself up over food and drink. I also went there after the cancer diagnosis. I have learned that we can do everything right and still get BC. No one knows why it's just the way it is. I will say though that I have changed how I eat greatly, and though I don't believe my diet caused the cancer eating better sure makes me feel better.

Anonymous

Hi, Kira,

I agree information is critical.

I really need to sit down with an expert and hear the results.

I really thing Susan Love's The Breast Book has been a wonderful resource. It's given me real information that I have found most helpful.

Things have been such a whirlwind it's been nice to have this weekend off and no surgeries scheduled so I can catch my breath and get ready for Tuesday's consult.

THANK YOU 

Anonymous

And, Kira, the reason mastectomy has been suggested was because after 3 lumpectomies the surgeon was unable to get clear margins. 

He recommended a mastectomy for the right breast, but with the chances of the DCIS occuring in the left breast I would opt for a double mastectomy.

But now it will be in Seattle's court to see if they concur

Beth 

kira1234

Beth, I can totally understand the reason for the mastectomy. My BS had to clean up the margins, and his feelings were if he didn't get it all then I would have needed the mastectomy. BC is such a scary thing. Once we have had BC we are always looking over our shoulder.

Anonymous

Kira,

 I think that looking over my shoulder is just setting in.  

  beth 

kira1234

Beth, Have you seen the path report yet? It is important you get a copy of it for your records. I have all the reports as well as all mammogram's that I keep on file. There is much info you will need as decisions are made over the next few weeks.

Anonymous

Kira,

 I have all my path reports. I didn't know having a copy of the mammogram was even possible. I had two mammograms at my local hospital and then a stereotactic biopsy at a hospital in Spokane. Would I contact medical records at the two different hospitals?

 I make my first contact with the Seattle hospital on Tuesday. I have no idea what to expect. The good news is my daughter knows someone at this cancer treatment center. 

Beth 

Infobabe

Beth1951

Beth, I am 76 so I think I qualify for this board.

I know your head is swimming right now but as soon as you decide on a course of action your mind will settle down.

Get and read all your pathology reports.  You won't really understand anything until you study them and know exactly what you are dealing with. 

I am DCIS, Stage 0, grade 1, hormone positive and my lesion (DCIS doesn't form a lump) was 9mm by 4mm (>1cm).  With the rescission I got big margins which I guess your doctor cannot achieve because of the DCIS moving through your ducts.

DCIS is not invasive so you want to get it all before it becomes invasive.  Some never do. 

I am having no more treatment after my rescission except for mammograms.  No rads, no chemo, no more surgery.  This decision was the  result of a 2nd opinion.

If my DCIS or any other recurrence occurs, I too will have a double  mastectomy.  I understand how you feel.  You will be long recovered before rads would even be finished.   Rads have a number of side effects I do not want to deal with.  Some are pretty serious though not every patient gets severe side effects (se).  Maybe a majority don't get the se's but I wouldn't want to take the chance. 

I think you are doing the right thing but you may wish to have a board certified breast surgeon. 

My case is not exactly like yours but I thought you might like to know how someone similar dealt with this.

Best wishes for a successful next few months. 

kira1234

Beth, Yes you can have a copy of all reports. The hospital will have them. I would check with the records department that is where I would guess they would be. They don't give them out till the Dr. has them just so you know.

So if all  the path report indicates you have is DCIS why did they do a SNB? That isn't usuall from what I am aware of.

Anonymous

Beth I am 61 and was diagnosed on the same day as you. I hope you get all the right answers when you go to Seattle. I'm blessed to have a wonderful comprehensive breast center within 10 miles of my home. I really like my surgeon, but I love my oncologist. She's so warm & friendly, but also comes highly recommended by a friend who's been in this battle for 10 years. She answers all my questions, and treats me as if I were her only concern in all the world. She never rushes me.

Please try to find someone who specializes in breast cancer!



Because of insurance changes, my surgery won't be until October 22. So, I still have about 7 weeks before I'll know my final diagnosis. I think this is the hardest part for me.



Blessings

Paula

Infobabe

 kira1234

DCIS does not require nodes but some doctors take them anyway.  Maybe I am wrong, but on these boards I have never seen nodes taken for DCIS that turned out to be positive.  

pupmom

Hi Beth, I'm not understanding why your diagnosis says DCIS and Stage 1. DCIS is Stage 0. Did they find some invasive cancer? Anyway, best wishes for a speedy recovery!

Anonymous

Wow,

it's so nice talking about all this stuff.

There is a breast cancer support group here but it only meets once a month so I haven't had a chance to really talk to anyone.

The doctor said the sentinel node biopsy is now a standard of care issue when they are doing a biopsy. I guess it shifts back and forth but right now it's recommended and it ended up negative.

The way he gave me the news was: do you want the good news or the bad news first: bad news: postive margins, good news : negative lymph node.

Infobabe, I agree with all you said and I feel the same way.

It really does come down to weighing options and going for what works best.

The real downside for me right now is not experiencing a sense of community. Luckily I happened upon this discussion thread, so I feel like I can toss things out and get a sense of what other folks are doing.

Thanks, ladies ! 

Anonymous

Soteria, where is your cancer center ?

Thank you for pointing out the staging problem.

I obviously need to get more information. It looks like with each Stage there are subsets.

After the first lumpectomy I wrote down ( mind you I was freaking out inside ) This is not a cancer, but we treat it as if it was. He said it was a " T-1 lesion. So I think that must be a subset of Stage ).

Clearly there is a lot for me to follow up on. That's why it's so frustrating to be in this rural community.

The closest breast center is 75 miles away. Seattle is a 5 1/2 hour drive or 1 hour plane ride. I am thinking perhaps I need to adjust my thinking over this whole matter and go to a place where all they see are breasts.

Infobabe

Beth, since you had so many lumpectomies I think you may have both DCIS, non-invasive, and IDC, invasive.  That would clear up the confusion and explain why your doctor said taking nodes is standard now.

Anonymous

Infobabe, I know it's non invasive because my pathology reports all say " non invasive carcinoma " and the dx is " ductal carcinoma in situ: solid and cribform types."

He viewed the first lumpectomy, when he did the sentinel node resection. as diagnostic

He did the second lumpectomy hoping to get clean margins.

He did the third lumpectomy hoping to get clean margins, but at the time he said if we didn't get clean margins at that time a mastectomy would be recommended. My margins were  .3 cm. and the standard of care is 1.0 cm.

He have taken out 3" in length by 2" in diameter of breast tissue.

So, going into the 3rd lumpectomy I knew ( at least from his perspective ) a mastectomy was next. What I am concerned about is Grade 3 aggressiveness as well as the discovery of another area of DCIS in the breast.

Thank you for responding to my inquiries, it helps me understand a bit more of what I am looking at.

Beth 

Infobabe

 Beth1951 

You are in good shape.  You are going to be OK. 

kira1234

Beth, You are getting great info from everyone here. It does seem you dealing with an aggressive form of DCIS according to the info you have.I was not aware doing a SL was done but it seems in some cases it is. Just know we all are behind you hoping well for you in your decisions.

Anonymous

Thank you so much, Kira. It is indeed aggressive As soon as I get any information I will run it by this group !

Beth 

curveball

@Beth1951,

you are correct, T1 is part of the staging information in your diagnosis--it's the "tumor" part of the Tumor/Node/Metastasis staging system. There's more information about it here. I still find the information you've been given somewhat confusing, because according to that link, DCIS would have a tumor status of Tis. It appears to me that T1 would only refer to a diagnosis of invasive cancer, yet your path reports say "in situ" and "non-invasive". Also, T1 would refer to a tumor with a greatest dimension of 1cm or less, while you have had a much larger area of tissue removed without obtaining clean margins.

I think your idea of consulting with a breast specialty center is a good one. They can probably clear up this diagnostic information for you.  

marywh

Beth-even after fighting breast cancer for four years, I still get confused by all the mis-information and no information and wrong information I get. Just remember that knowledge is power  and you will learn to weed out the things you need to know and question the things that concern you.  I just turned fifty four and was diagnosed at age 50. Mine was unfortunately farther along than yours, but I still remember that lost feeling. Just remember all these ladies are going through similar situations and we can all be there for each other regardless of our ages. Thoughts and prayers are with you...